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Journeying Through Dementia

Journeying Through Dementia

An evidence-based group programme created by occupational therapists and people with dementia for individuals at an early stage of their dementia journey.

Partners: Alzheimer Scotland
Team: Claire Craig & Helen Fisher

Journeying through Dementia is an occupation-based intervention that aims to support people at an early stage of their dementia journey to engage in meaningful activities and maintain community connectedness.

The programme was developed in partnership with people with dementia who spoke of the value they attached to continued participation in everyday occupations and in new learning. Throughout all the co-creation activities, people with dementia were clear that wanted to have the opportunity to access groups that did not just talk about the diagnosis but that offered practical advice and support of how to continue to live well with the condition.

This intervention directly supports delivery of ambition 1 of Connecting People, Connecting Support (Alzheimer Scotland 2017) of enhanced access to enable people to be supported to look after their own health and wellbeing.

Emphasis throughout is placed on ‘doing’ rather than simply talking about strategies and challenges. Individuals are given the opportunity to put ideas into practice either within the group or through organizedout of venue activities. This helps to build confidenceand also encourages active problem solving. The community is seen as a place where skills are enacted and the place where individuals can access a wide range of resources to support roles, maintain and develop relationships and to experience enjoyable leisure activities, which support well-being.

Pilots have been carried out in Scotland with Alzheimer Scotland, Fife Health & Social Care Partnership and NHS Grampian, and the South Carmarthenshire Older Adult Mental Health Team, based in Prince Philip Hospital, Llanelli, Wales. The following video features our Llanelli Journeying Through Dementia Group.

Background

Journeying through Dementia was inspired by a growing number of people living with dementia who were meeting together in their communities to offer each other support. This approach was best exemplified by the work of the Scottish Dementia Working group.

Gail Mountain and Claire Craig (2004) had successfully undertaken research to develop and facilitate an occupation based group aimed at community living older people called Lifestyle Matters which had enabled individuals to connect with valued occupations in later life and to adapt and enact meaningful occupations in the community and this raised the question whether a similar model (peer sharing, group work and didactic teaching) could be used with people with dementia.

Claire Craig then worked nationally with people living with the condition to build understanding of what people with a recent diagnosis of dementia identified as being helpful or resources and support they felt would have increased their quality of life. The results are reported in a paper: What should be in a self-management programme for people with early dementia? (Ageing and Mental Health, 2012)

This research then formed the basis from which Claire Craig developed the initial Journeying through Dementia Intervention. For the next ten years small pieces of funding supported the refinement of the programme and a total of six groups were facilitated, each time people with dementia gave feedback and helped Claire and Helen shape the final iteration of the programme and kit of resources that you see before you now.

With special thanks to Design Futures Packaging for bringing the resources to life.

When I go home from here, I feel better and do more.
The more you do, the more you can do.

Journeying through Dementia participant

I feel we’re helping one another, being on the same wavelength.
I have new friends I don’t think I will ever forget.

Journeying through Dementia participant

The 100-Year Life project

The 100 Year Life Project will exploit and advance the role of design research in enabling older people to lead longer, more productive lives – the longevity effect. Lab4Living has been awarded funding by Research England through their Expanding Excellence in England (E3) fund to support the strategic expansion of research in this area.

Funded by: Research England


Due to higher life expectancies the number of people expected to live to be 100 will increase significantly by 2066. The changing demographics and structure of the population will bring many challenges to society, the economy and services. However this will bring new opportunities for the emergence of new markets, increased involvement in volunteering, longer working lives and possibly providing care for family members. Individuals will need to plan their life and retirement differently with existing ideas of ageing being replaced with models of a multi-stage 100 year life (birth, education, work, education, training, work, career break, education and training).

Age related products, new housing models and care technologies which enable older people to lead more independent fulfilled lives will be considered within this project answering questions on what these products are, how multi-sectorial groups of people will work together, what standards and quality assurances are required for these products and services  and how this knowledge is shared across sectors.

“One in three children born in the UK today can expect to live to be 100 – and by 2066 one in two children will reach this milestone. We need to look at what this expanded life-span will mean for where and how people live; what products will they use; what the implications are for health care, communities, and, of course, the home.”

Prof Paul Chamberlain

Focusing on informing the scale and scope of the Future Home, the project will generate ideas for new aspirational products, protocols and interventions which meet the physical, cognitive and emotional needs of an ageing population within the Future Home.

Related news:

For more information, please contact Julie Roe, Project Manager E3, Lab4Living.

The Power of Sheffield Journeys

The ‘Power of Sheffield Journeys’ utilizes film and video elicitation to explore the potential of film and digital technology in helping older people and people with dementia to re-connect with meaningful journeys and to build community connectedness.

Funded by Sheffield Hallam University: Catalyst

Partners: University of Northumbria, South Yorkshire Passenger Transport Executive, Dementia Action Alliance, Alzheimer’s Society

Project lead: Claire Craig

It is estimated that globally 47.5 million people have dementia (Alzheimer’s Disease International 2015). At present, no cure exists and consequently emphasis has been placed on the development of approaches and interventions that focus on quality of life and strategies to equip individuals to cope with the challenges that living with this long-term condition brings. 

Creating potential solutions to enable individuals to live in the home environment, to continue to connect with and contribute to the communities of which they are a-part and to engage in meaningful activities is a priority if people are to be supported to live well with dementia.

The ‘Power of Sheffield Journeys’ has explored the potential of film and digital technology in helping older people and people with dementia to re-connect with meaningful journeys and to build community connectedness. The enquiry has sought to understand how the arts (most notably film and photography) can promote social inclusion of marginalized groups. Sixty older people and people with dementia have engaged in the project to co-design a series of films that bring meaningful journeys to life again.

The research has shown that people with dementia have been able to fully engage in the process and that visual methods of video and photo-elicitation are useful methods to gain understanding of the experiences of older people living in the city.

“ This research highlights how design and creative practice can foster a sense of community. Most significantly it has positioned people with dementia as ‘experts’ in creating a rich cultural resource that can be accessed and used by future generations ”

(Claire Craig).

The films have formed the basis of a series of pop-up exhibitions across Sheffield and are currently being used to stimulate and capture further rich oral histories relating to memorable journeys and key points of interest in the city’s history. Even at this point in the research the films are challenging some of the pre-conceptions surrounding the condition and what people with dementia can achieve.

The films are now being used across all of Sheffield Care with residents.

Related news:

Enabling Ongoingness

This research seeks to understand the benefits that design and digital technologies might bring in offering new ways to, firstly, express a sense of who they are in the present, and, secondly, to make objects and media content that will support other people after one’s death

Funded by EPSRC

Partners: Northumbria University; Newcastle University; BBC;  Marie Curie; CRUSE Bereavement; National Council for Palliative Care

Project lead: Claire Craig

Project team: Helen Fisher

The project is a design engagement with older people, people living with dementia, people approaching the end of their lives and people who are bereaved.

We are living in a time when life expectancy is the highest it has ever been (81.5 years average life expectancy in the UK).

However, this positive achievement of medicine and modern ways of living means that as the nature of growing older is changing, so too is end-of-life. Whilst promoting the inclusion of older people in society enriches our social make-up it also gives rise to new challenges.

For example, there is an increasing demand for care, but reductions in resource available to support the older old and a reduction in people using local authority supported care services.

In terms of bereavement, studies have identified a huge hidden cost associated not only with increased mortality of the bereaved but also their increased hospital stay and bereavement-related consultations. In Scotland alone this hidden and latent cost translates into £20 million per year.

Of the 500,000 people who die each year in the UK, currently around 92,000 die with unmet needs for palliative care. The increasingly complex needs of more people who are living longer with life-limiting conditions is positioned by Hospice UK as a current grand societal challenge as the demand for care at the end of life is set to rise steeply between 2016 and 2025.

“This research addresses the big questions to interrogate the meaning of life and death in the digital age”

(Ongoingness participant).

Personal digital content and assets are continuously being created, by us and around us. Through social and personal media we are creating status updates, voice recordings, conversations, videos, photographs and blogs which all contribute to the coalescence of a digital trail and identity. However, what we cannot purposefully do is curate these digital assets to specifically support a sense-of-self, help people deal with their own approaching end-of-life, nor help others deal with bereavement.

This research study therefore seeks to work with individuals facing major life transitions to help curate their digital content through a creative process to embed this within a series of personal digital artefacts that the person will own and which will support them at points of transition (e.g. following bereavement, managing a long term condition).

Designing a Dementia Friendly Eye Clinic

This study sought to re-design facets of an eye clinic to make it responsive to the needs of individuals living with a diagnosis of dementia. The study resulted in the development of a series of discrete design-led interventions, created in partnership with and validated by people with dementia participating in the study.

Funded by NIHR CLAHRC YH

Partners: Professor Jo Cooke (CLAHRC); Jane McKeown (Sheffield University); Mary Freeman (Nurse Consultant, Opthalmology  Sheffield Teaching Hospitals, Alzheimer’s Society)

Project lead: Claire Craig

Project team: Sarah Smith, Tom Maisey

Dementia is an umbrella term for a number of progressive conditions, all resulting in memory loss and disorientation. Speed of deterioration varies by condition and by individual (Alzheimer’s Society, 2015).

Whilst there is no cure as such for the condition, many people with a diagnosis are able to make adjustments to every-day life which enable them to continue to live well with the condition. However symptoms of dementia mean that people need more time to understand information and procedures. Procedures in acute care can be daunting, resulting in distress for the patient (International Longevity Centre, 2016), who may be unable to describe their current health needs (Royal College of Opthalmologists, 2015).

However, this positive achievement of medicine and modern ways of living means that as the nature of growing older is changing, so too is end-of-life. Whilst promoting the inclusion of older people in society enriches our social make-up, it also gives rise to new challenges.

This design-led study sought to re-design facets of an eye clinic to make it responsive to the needs of individuals living with a diagnosis of dementia. The project ‘creating a dementia friendly eye clinic’ focused on people who had sight loss or who were at risk of experiencing sight loss in a Northern City in the UK.

A problem-based ethnography built understanding of the current eye-clinic pathway, the types of activities and procedures individuals engaged in during a visit, and the broader environments where these took place. Subsequently, focus groups with people with dementia were held with a designer and artist in residence. A series of pre-prototypes were created in response to these. These were shared in two further meetings with staff and a further focus group that included people with dementia, individuals supporting people with dementia and Sheffield Royal Society for the Blind.

“This is such an important piece of work that will make a difference to so many people”

(family member of person with dementia).

Feedback from these meetings was incorporated into a series of interventions including a pre-visit information leaflet, a design for a patient-held record and a training package for staff.

The project highlighted the need for design to be responsive to people living with multiple conditions. Findings have been shared with colleagues in Ireland, New Zealand and Scotland. There are plans to extend and develop this work.